Be Accountable. Most insurances will cover for a second opinion and sometimes
more. If yours does not, it is worth spending the money for an additional consultation.
You are worth it! A personal recommendation by someone you respect or know who has
been treated by the doctor gives you an advantage. Do not select a doctor simply because
he or she is close or convenient. The major medical centers and teaching university
hospitals tend to see a much larger number of patients with bladder cancer and are,
therefore, often more experienced than most doctors in smaller communities. Also, the
more notable medical institutions are more likely to have the latest in technology and
often employ the more skilled physicians. If you live close enough to one of the leading
medical centers that treats bladder cancer, that is likely the best choice you can make.
It is imperative to find a doctor who has expertise in the area of bladder cancer and has
a good track record. We are talking about your life here....the quality of your medical
treatment and life after cancer should be your top priority. The choices you make for
treatment will be critical to your future well being. Do not let your family members or friends,
or even your doctor, make the treatment decisions for you.
Pay close attention to what they say but remember you are the one who will have to live with the results on a daily basis. You are the one who will face the consequences in an up front and personal way each and every day afterwards. It is not easy to make such crucial decisions, however, no one but you should make them. It's your call.
Be a Warrior. Why be a warrior? Well, aside from battling cancer, you may find you have to do battle with the medical community and possibly your medical insurance company. Even if you feel you aren't an aggressive personality.....trust me.... you can become a warrior if you set your mind to it. Get angry! Become hungry for information on the subject. You will need to learn as much as you can about the disease and what kind of treatment options are available.
In many cases, there are three options available to those who have to lose their bladders to cancer but not all doctors will fully educate you in this area. All too often, they will only talk to you about the procedure(s) they are skilled at doing and most urologist are not experts in all three procedures. You will need to find the best doctors available who have the expertise in the type of procedure you are interested in. You will need to ask lots of questions, keep notes, request copies of your procedures, test results, and reports and do follow up. You may have to fill out a form for release of information even if you are requesting copies for yourself. You may have to pay for the copies but it is usually a minimal cost per page copied. It is very beneficial to either use a recorder during consultations with the doctors or have a good note taker along with you. Cancer is an emotional issue and patients seldom hear or remember all the doctor will say during a visit. After my appointments I would play back my tapes and hear something said for the first time....and I thought I was paying close attention.
It is absolutely necessary to be aggressive, persevering and even pesky at times to get the results you want. Yes, I realize that when you are sick, you probably do not feel you have the energy to fight but somehow you must muster up the strength and resolve or find someone who can act as your advocate. Do not assume that since you have been seen by a doctor or medical office you like or that because you have committed yourself to treatment, things will happen smoothly. There are many wonderful, dedicated medical personnel in the world but let us not forget that they too are human....that humans make mistakes, are sometimes late to respond, and sometimes have bad days.
I cannot overemphasis how important it is to be vigilant and to keep good records and notes. Do not assume you know what will happen....learn what type of questions to ask and verify your assumptions. Again, I want to reiterate....try to keep copies of all your medical records and maintain your own medical file at home. It takes time, energy and much perseverance, but again, trust me....all the work is so worth the effort.
Faith is key.It is said and I believe it, that God would not allow adversity into our lives if we weren't able to handle it. If you research the subject of cancer and talk to enough people who have successfully battled cancer, many will tell you it was their faith that gave them the strength and resolve to overcome the negatives associated with their illness. It is a tough fight and no one but God knows what the outcome will be. Why not surrender your fears to our Creator. Who understands our pain better than He? That means giving Him our anxiety....while we keep fighting cancer... with Him at our side. By asking Him to direct our journey, we come to experience His grace and goodness in ways we would never have imagined. In my personal experience, this idea was key to my survival. I do not endorse any particular church or religion, but I do advocate a close, personal relationship with God. Without this relationship, I truly do not believe I would be here today to work on this website.
Find support where you can.You will need others to help you along this journey. If you have always been the strong, independent type, give up that idea for now. Be willing to lean on family and friends to help you get through this ordeal. If you don't have that kind of support, make new friends on the Internet via forums....see "Resources" listed in website headings. Don't be alarmed if some of your family and/or friends create some distance between themselves and you. This often is a method of protecting themselves because they don't know how to handle the news of your illness....they struggle with what to say or do. They realize it could be them having to fight a disease as easily as it is you. Try not to take it personally. Later on they may be more accepting and willing to help out. Sometimes, they just need you to tell them how they can help. Let them know!
I strongly suggest you go to the Internet and search for those cancer website that feature a forum....particularly communication between bladder cancer warriors or check out a local cancer support group in your community. Those who have been there....who have fought the battle themselves....will open their hearts to you, as a newly diagnosed patient or as a caregiver, and they have a wealth of experience, information and encouragement to share. Please see 'Other Resources' on this website for bladder cancer links that provide additional information. Reach out!
Trust there is a reason. Not everything about cancer is negative. While going through treatments you will have an opportunity to meet others who are in their own struggle with cancer and you will readily identify with some of their concerns. You will find some of the most noble and loving spirits are those who have the fiercest battles to fight. Keep an open mind. There are lessons here to be learned. No matter how grim the circumstances appear, something good and wonderful will result from your journey but it will take time and an open mind to make that discovery. Stay hopeful!
Take one day at a time. When faced with the pain of cancer and the side effects, that adage must be lived out...otherwise, it is overwhelming. Treatment and healing take time and there is no rushing it. Also, keep in mind, that we all experience situations differently and your response may differ from mine and others. Be careful not to set too many expectations for yourself.....cancer requires us to slow down. Mark your medical appointments on your calendar but don't be fearful about what may or may not happen tomorrow, next week or next year. Don't let worry rob you of today's energy and possible joy. Focus on today and what you can do today to feel better. Look for what is good in the moment and enjoy it. Trust that tomorrow you will be one day closer to restoring yourself to good health and keep working to that end. Learn to be patient!
We are far stronger than most of us know. We discover our strength when faced with our own mortality. You may feel worn down, exhausted with just the idea of cancer but deep inside you, there is an inner strength that can be tapped. Believe in yourself and your ability to war against cancer and your ability to recover. I believe you can do it, because I was able to do it. I had always considered myself a wimp, especially when it came to physical illness. But I surprised everyone, most especially myself by how I responded to my cancer crisis. My spouse still talks about how impressed he was with the courage and stamina I reflected during my journey. I know that you too, have that ability if you just tap into it. You never know how strong you can be until tested. Believe in yourself!